“Five computers containing medical and personal information of more than 3,000 patients were stolen from a Stone Oak physician’s office in October.

Dr. Sudhir Gogu of the Stone Oak Urgent Care & Family Practice said the computers were stolen after an office door had been pried open sometime during the weekend of Oct. 22-23, according to the police report.

A San Antonio Police Department spokesman said in an email Wednesday that the computers have not been recovered and there have been no arrests…

…Dr. Deborah Peel, founder and chairman of Patient Privacy Rights, an organization focused on putting people in control of their electronic health information, called medical identity theft a dangerous crime.

The British Prime Minister proposes opening up and selling the health information of British citizens, ie copying the US model of data sales because he sees it’s worth tens-hundreds of billions in annual revenue to those in the US selling data. For at least the past decade, US industry has been violating Americans’ expectations and strong rights to health privacy by selling and using sensitive patient health information without consent, and without public awareness, much less, debate.

Prime Minister “[Cameron] sees no limit on the involvement of the private sector and says he wants it to be a ‘fantastic business’. In his desperation to develop a credible industrial strategy, he seems willing to put large chunks of our NHS up for sale.”

Roger Gross, from the pressure group Patient Concern, said that allowing private firms access to NHS data would mean “the death of patient confidentiality”.

“We understand GP surgeries will have the right to refuse to release their patients’ records, but whether patients will ever be told what is happening, let alone have the choice to protect their privacy, is still unclear,” Gross said.

We congratulate the leaders in Congress, Reps Markey, Barton, DeGette, Stearns, and Andrews for calling TRICARE and SAIC on the carpet for not securing military families’ sensitive health data. See the letter here.

We hope this letter leads to Congressional oversight hearings into the industry-wide culture of disregard for the privacy of military personnel’s and all Americans’ sensitive electronic health information. The worst serial corporate abusers should be penalized and prevented from getting federal contracts. We need Congress to get to the roots of the industry-wide disregard for health privacy FAST, before millions more people are harmed, not just by medical identity theft, but by the use of health information to discriminate against them in employment, credit, and other key opportunities in life. Once health records are exposed, they can never be made private again.

It is well-known in the healthcare industry and by privacy advocates that about 80% of healthcare providers and the health IT corporations that manage health information have ignored federal laws requiring encryption and data security protection for years. Obviously, head-in-the-sand approaches to data security simply don’t make sense. Clearly it’s cheaper and easier for corporations to ignore the law and common sense than it is to protect our most sensitive personal information, from diagnoses to DNA.

The fact that SAIC has continued to get billions in funds from the federal government despite repeated breaches of sensitive health information shows also that the federal process of awarding, monitoring and auditing, and assuring performance of billion-dollar contracts needs investigation.

Providers, healthcare organizations, and technology companies that do not use state-of-the-art data security for health information should not be allowed to work in the healthcare field. If you are unwilling to protect patient data, you don’t belong in healthcare.

We also strongly support the proposal to make sure that victims of health data breaches receive effective state-of-the-art remediation. Victims should be able to use new technology that enables them to monitor all health insurance claims before they are submitted, so they can prevent the fraud and prevent other people’s health data from being added to their health records.

Four members of the House Energy and Commerce Committee and one member of the House Armed Services Committee want some answers from Dr. Jonathan Woodson, the Pentagon’s top medical official, about how the Defense Department handled the September theft of computer tapes containing the records of 4.9 million TRICARE beneficiaries from the car of an SAIC employee in San Antonio, Texas. Woodson is the assistant secretary of Defense for health affairs and director of the TRICARE Management Activity, which was responsible for the data.

Woodson has been mum on this debacle since it unfolded, and in fact gave a speech in San Antonio the week after the theft was reported and, as far as I can determine, never addressed the issue…

…Last month, TRICARE directed SAIC to offer credit monitoring services to patients whose information was stored on the stolen tapes. Dr. Deborah Peel, founder of Patient Privacy Rights, an advocacy group based in Austin, Texas, says this does nothing to insure the safety of health care information on those tapes.

Peel, who sent me the Congressional letter to Woodson, said those patients should also be provided with new technology that allows them to monitor all health insurance claims before they are submitted, so they can prevent fraud as well as other people’s health data from being added to their health records.

“Planned changes to the European Union’s Data Protection Directive (EU Directive), some of which are directed at non-EU companies, may significantly impact how U.S.-based entities that interact with EU consumers can collect, store and use consumer data.

The revised EU Directive will give consumers more control over their personal data, including requiring explicit user consent before companies can use data and giving consumers the right to delete data, especially data they posted themselves, otherwise known as the “right to be forgotten.” The proposed changes also will likely include increased transparency for data processing – providing greater information about when and how data is collected, stored and used, and making it easier for consumers to indicate their privacy preferences.”

A study of US and EU health data protections in the Journal of Science & Technology Law concluded Americans “have no real control over the collection of sensitive medical information if they want to be treated.”

Wow! It’s great to see legal scholars second the message that Americans’ rights to health privacy were eliminated.

You can see the article on the study in The Epoch Times here, written by Mary Silver.

For years, Patient Privacy Rights and the bipartisan Coalition for Patient Privacy were the lone voices carrying this message to Congress and the public.

Public and expert support to restore control over sensitive health data will only build. Soon, no one will buy the argument that privacy is an obstacle to electronic health systems.

Here are some other key quotes from the story:

“EU countries have adopted electronic health records and systems, or EHRs, and legally protected privacy at the same time.”

“The 1950 Council of Europe Convention identified individual privacy as a fundamental value”

“the good aspects of EHRs can be undermined by the bad consequences of poor privacy practices and the ugly effects of inadequate security”

“patient privacy is much better protected in Europe”

“European patients are able to encapsulate particularly sensitive medical information, and an individual has far greater access to and control over his records in Europe than in America.”

So, again why is the US government rushing to spend $29 billion on health IT systems that offer neither privacy nor security?

We can expect to see many more lawsuits over breaches because most US health systems have abysmal data security and by design allow thousands of employees to access the sensitive health information of millions of patients. This immense scale of damage was simply impossible with paper systems.

Ironclad security is very difficult technically (think WikiLeaks) because health systems were architected to enable ‘open access’ by hundreds or thousands of employees to millions of sensitive health records.

Today, the only ‘barrier’ to health data access in the US are ‘pop-up’ screens that ask, “Do you have a right to access this patient’s information?’ This is hardly effective. Yes, of course, after-the-fact audit trails of access can be used to identify those who should not have seen a record. It is a very weak kind of data protection; in fact, today patients identify the majority of data breaches, not health IT systems.

When will the US get serious about building privacy-enhancing architectures where ONLY clinical staff or others who are directly involved in a patient’s care can access the patient’s data with informed consent. Systems that prevent access by MOST employees could prevent the vast majorities of data breaches and data thefts.

Using and building systems designed for privacy would be a FAR better use of the stimulus billions than how they are currently being spent: to buy and promote the use of HIT systems that cannot possibly protect health data from misuse and theft, and in fact is designed to spread health information to many unseen and unknown secondary corporate and government users.

Give me some brief background about yourself and about Patient Privacy Rights.

I never expected to be leading this organization or ever even thought about that. In my younger days, I practiced full time as a psychiatrist and Freudian analyst for a very long time, until it became clear that things were happening in DC that would make effective mental healthcare impossible. Namely, that there were lots of different ideas being floated; for example, the Clinton healthcare initiative. There was a part of it that was going to require everyone’s data from every physician encounter be recorded in federal database.

Fast-forward to the HIPAA privacy rule. That’s what really convinced me of the need for a voice for consumers, because there really wasn’t any. What I’m talking about there is, of course, the change in 2002 that happened under everyone’s radar except for – and this is the is the laugh line – when the 3,000 Freudian psychoanalysts in the nation noticed that consent was eliminated.

In 2004, I started Patient Privacy Rights because there was no effective representation for the expectations and rights that the majority of Americans have for how the healthcare system is going to work. Namely, that people don’t get to see their information without consent. Since founding PPR in 2004, we’ve still been the national leading watchdog on the issues of patient control over information and even internationally. Our power has come because when we came to DC, the other people that were working on privacy, human rights, and civil rights recognized that because of my unique position as a physician and deep understanding of how data flows, that I knew what I was talking about.

We very quickly got a pretty amazing bipartisan coalition of over 50 organizations. That enabled us to put these issues and problems on the map.

We had some incredible successes in HITECH. Virtually all of the new consumer protections came from our group, including the ban on the sale of PHI, the accounting of disclosures, segmentation, the new requirement that if you pay out of pocket for treatment you should be able to block the flow of that data to health plans and health insurers. We were the ones that worked with Congressman Ed Markey on getting encryption, required stronger security protections, and worked with Senator Snow to get meaningful breach notice into the rules.

All of this work lead to the first-ever summit on the future of health privacy this past summer in DC. The videos and the entire meeting can be seen or streamed online at www.healthprivacysummit.org.

If somebody said you had to choose between accepting healthcare IT as it is today or going back to purely paper-based systems, which would you choose?

As I mentioned in a recent post, nearly half of Australians may end up boycotting the new voluntary electronic health record (EHR) system when it launches next year because they believe the government can’t provide guarantees that their private medical details will remain private. A new Harris survey sponsored by the identity management company Sailpoint highlights EHR privacy concerns not only in Australia, but also in the United Kingdom and the United States.

According to the survey findings, some 83 percent of Australians, 81 percent of Britons, and 80 percent of Americans express some level of concern about moving their personal medical information to an electronic form…

…For example, since September 2009, at least 9.8 million instances of improper disclosure of medical information have been recorded in the United States. Earlier this month, the renowned Stanford Hospital & Clinics in California added to the total when it announced that the electronic health records of 20 000 of its emergency room patients seen between March 1st and August 31st of 2009, including their names, diagnostic codes, medical record numbers, hospital account numbers, billing charges, and emergency room admission and discharge dates, had been posted for nearly a year (Sept. 9, 2010, to Aug. 23, 2011) on a commercial Web site called Student of Fortune.

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Abstract: Recently there have been calls to clarify ownership of data held in large health information networks. This article explores the realities of what patient data ownership would imply to explain why a clearer allocation of entitlements to raw health data would neither enhance patient privacy nor promote access to valuable data resources for public health and research. It updates the debate to account for the 2009 HITECH Act, which correctly recognized that raw patient data are not the valuable resource; these data acquire value only through the application of infrastructure services. The HITECH Act drew on a long tradition of American infrastructure regulation that offers real promise in resolving the infrastructure bottlenecks which (rather than the unresolved status of data ownership) have been the key impediment to data access. Despite this progress there are two unresolved problems, both heretofore neglected in the literature: First, the existing federal regulatory framework governing data access conceives the state’s police power to use data to promote public health much more narrowly than the police power is conceived in all other legal contexts. Second, existing regulatory provisions allowing nonconsensual access to data for research fail to incorporate any “public use” requirement to ensure that unconsented research uses of data are justified by a publicly beneficial purpose. As things stand, persons whose health data are used in research have no assurance that the use will serve any socially beneficial purpose at all. This article reframes the debate. The right question is not who owns health data. Instead, the debate should be about appropriate public uses of private data and how best to facilitate them while adequately protecting individuals’ interests.

Barbara J. Evans: Associate Professor; Co-director, Health Law & Policy Institute, University of Houston Law Center, : Barbara J. Evans, Much Ado About Data Ownership, 25 HARVARD JOURNAL OF LAW & TECHNOLOGY (forthcoming 2011), available at: http://ssrn.com/abstract=1857986
bjevans@central.uh.edu. J.D., Yale Law School; Ph.D., Stanford University; Post-doctoral Fellow, The University of Texas M.D. Anderson Cancer Center. This research has been supported by the Greenwall Foundation and by the University of Houston Law Foundation.